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Caroline Spencer

Sandra Johnson Name: Caroline Spencer

Age: 33

Where do you call home? I am from Cincinnati, OH but just moved to Massachusetts, near Worcester.

Education/Career: I recently completed my PhD in speech pathology! Because of FA, I know what it is like to be a patient, and I feel that it gives me empathy for people with other kinds of disabilities and communication disorders, too. Being a patient myself makes me aware that research should not only be scientifically interesting, but meaningful to the patients, too.

What is a typical day for you? Mornings start with taking care of my service dog, Clark and getting us both ready for work. I am a postdoctoral fellow in the Communication and Neurodevelopment Lab at Boston University. In this post-COVID summer, I am going to work some days and work from home the others. I usually go for a walk with Clark at lunchtime. In the evening, my boyfriend and I will either cook something at home or go out to dinner. On the weekends, I like to work around the house or ride my trike.

 

 

How long have you known you are living with FA? I was diagnosed with FA in 2012, after about four years of seeing neurologists and trying to figure out the reason behind my balance and coordination problems, slight dysarthria, and nystagmus.

Sandra Johnson Are there any others with FA in your family? I am the only one in my family with FA.

Describe your transition from walking to walker/wheelchair. I have a Great Dane service dog named Clark who helps me walk and balance. I hold onto his harness and he walks at my pace, as a “portable railing”. He can brace to help me get up if I fall, and also stays steady to help me up and down stairs. He is much more versatile and fun to be with than a walker or wheelchair!

What do you like to do to stay active and what type of exercises work for you to stay strong? I like to go for walks with my dog. Over the past year, I’ve worked a lot with him to learn how to walk/run next to me while I ride my trike. I also find balance drills and resistance training with a personal trainer really helpful for me to stay at my best.

What is a good trick to make daily life easier? Get a good night’s sleep! Another small thing is that I recently bought a cordless vacuum. It’s a lot easier to maneuver without worrying about tripping over the cord or trying to maneuver a walker and a corded vacuum cleaner at the same time!

When FA gets you down, what do you think/do to feel better? Take a nap or make sure I eat something. Fatigue has been a big symptom for me in recent years, so I have to take care of any tiredness first. And I hug my dog and try to remember to give myself a break.

What is one way living with FA has POSITIVELY affected your life? I wouldn’t say I am blessed to have FA, but I am blessed to get to know the people FA has brought into my life.

Sandra Johnson What is the best advice YOU could give a person who has been newly diagnosed with FA? The best piece of advice I could give is that it’s ok to take time to adjust/grieve over the diagnosis. It changes what your future will be like. But also that it probably won’t happen like you fear, that there are lots of good things that will happen in your future, too. And there are great people who also have FA who are resilient and figure out how to live life despite FA. And we can help you!

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? “I have FA but FA doesn’t have me” means figuring out how to still do things that make life fulfilling, like working, having relationships, and traveling. I do it with a lot of help from family, friends, and even strangers—people are so eager to help the woman with the giant dog! I’m more willing to try new/difficult things because of Clark. It is so important for him to continually get out and work to keep up with his training, so that’s a big motivation for me.



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